NICU - Part 2

This is the second in a series of posts I've written covering Channing's NICU story. This will probably be published in 6-7 posts ie it's long! Bear with me.

Read Part 1 here

Warning, this is really tough stuff. If you're looking for warm and fuzzy, close your browser now. . .

Expectations
Channing had the CT scan later that same day and they said the findings were consistent with what they originally thought but the Dr. wanted a pediatric neurologist to look at the scan just to be sure. The neurologist was on vacation as this was the week of Thanksgiving. We had a conference with our NICU team to discuss the ct scan results a few days later. This was the day I was set to be released from the hospital. I dreaded this meeting more than anything in my whole life.

MG and I sat there as people told us our child would be disabled, that we needed to enroll her in a school for special needs kids, she would probably have seizures, she would never live independently. Children are all about hope and the future. We had no hope, we felt like our future was gone.

I still repeated to them several times in our meeting, “Mild but you said mild. See right here on the radiologist’s report: it says mild!!”. They shook their heads at me. Even the mild form was a devastating diagnosis. Yes, they used the word devastating many times. She would probably never talk, never walk, never do anything. They told us that to further categorize the severity of the fusion she would need to have an MRI done closer to term (her due date).

Then they dropped another bomb on us. They said in addition to the holoprosencephaly (HPE), they thought Channing might have another brain defect. This one even more serious. Most children with this defect die before the age of 2. They wouldn’t really comment too much about this. Just said they thought it was a possibility. I asked the doctor to give me a best and worst case scenario. He wouldn’t give me the worst case. His words were “You don’t want to go there”. Again, we would have to wait for the MRI at term to know for sure.

MG and I walked back to Channing’s NICU room after the meeting and just cried. We left the hospital that day half dead in a living nightmare. Not only was our baby born 13 weeks early, she had a horrible brain defect that no one could fix. That drive home from the hospital was one of the worst times in my life. We were going to the big house that we bought to raise her in. We passed by two of the schools that we hoped she would go to.

MG’s parents were at our house unpacking for us. MG couldn’t face them. I had to tell them. I don’t remember what I said, something like “Channing has some problems with her brain and it’s very serious”. I remember being vague. We never told anyone the actual condition in fear that they would google it. Telling someone made it real. This is part of the reason we didn’t share any of this before. Plus, it was hard enough to deal with our own disappointment let alone everyone else’s.

Part 3 tomorrow